September 7th 2012- 4 Years

The beginning of this month was my four year anniversary of the beginning of this Lyme journey. Ick. Four years?

I know there are a lot of people who have been through many more years of this struggle, but this still really stinks!

I have had Lyme and several fun coinfections for most of my life, about 25 years. Symptoms built up more and more and I really started to crash when I was in my early twenties, and at 25, I finally found my answer.

It was the day I wobbled into Dr S’s office with a bum leg that I could no longer feel. You could have probably have hacked it off with a saw and I would not have noticed. September 7th, 2012. A day I will never forget, a day that will remain imprinted in my mind.

Once I started treatment, shit hit completely hit the fan and I have not been the same ever since. My doctor asked me once, “Would you do this all again? Start treatment? Now knowing what it has done?”

Kind of a loaded question. Yes and no I suppose as I think about it now. This disease is absolutely miserable.

As I had mentioned, when you start treatment having chronic Lyme, coinfections, MCIDS, or whatever you prefer to call it, especially for so long, it is going to hit you, and HARD.

The question to myself is if I didn’t start treatment, where would I be now? Or how much worse would this be? Would it be worse? I might be better off doing exactly what I have done for this reason.

Would I have leveled out on my own and somewhat suppressed the infections like I had for all those years? Symptoms were certainly there, but I was still “me”. I’d just have to deal with the symptoms I had.

This year I definitely had my ups and downs. There has been some huge accomplishments. Going shopping on my own, not needing a babysitter for some tasks, finally getting my POTS diagnosis, walking the beach, I did very well for not being on antibiotics and taking a break. I didn’t immediately fall apart.… the list goes on.

The biggest downfall is that I reached a point that I just plain couldn’t tolerate treatment anymore. I just couldn’t do it anymore. My body began to reject the antibiotics and I ended up with a gut infection.

I slowly have begun to crash. My nasty coinfections have come back to play, my tics have returned, and I keep getting more and more exhausted. I feel like I have slept this entire year away!

I recently saw Dr S, and I have now begun working on Babesia again. A round of Coartem and a tincture. Holy crap. Yup. Clearly still an issue. I am also working on my gut still, mitochondrial and adrenal issues.

Definitely continuing on trying to control my neurological issues. I see Dr S next week again for another follow up and game plan, I will try to not be a slacker and give an update!!

Instead of giving a great big long spiel from the beginning (you can read it all from the very start of this adventure), here is my story from each year from the start of my treatment:

https://kimmiecakeskickslyme.wordpress.com/2013/09/07/september-7th-2012-one-year/

https://kimmiecakeskickslyme.wordpress.com/2014/09/07/september-7th-2012-two-years/

https://kimmiecakeskickslyme.wordpress.com/2015/09/03/august-7-2012-3-years/

Andddd a little photo montage from the start of treatment until now. A picture is worth a thousand words, right?!

 

 

 

Well. That is about all I have in me today. Almost Friday. Wishing you all a great weekend! Keep fighting. That’s all we can do. Remember to always look for those silver linings and positivity is a powerful medicine. Much love to you all!

Oh yes, and here is my Miss Olivia Newton Fartin’ Martin. She says “hi”. She put herself in  a time out about a week ago. We still can’t figure out what she did! What a goofball!
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*Disclaimer: Due to plagiarism and copyright infringement issues I am currently facing, I am formally requesting to NOT copy and paste my work as your own, please and thank you.

If you would like to share (and I encourage it!), please use my link to my blog only, or hit the “share button” on this page. Thank you so much.

 

March Part 1 – Big Decisions

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Once again, I apologize, I have been slacking on updating you all. I have some negative news, some very positive news, and I have made a very big decision about my future course of treatment.
Where I left off, for those who do not follow me, (you should, because I am awesome), I started my “bomb day” in the morning, and then heading off to biomagnetic therapy in the early afternoon.
When it was time to leave for my appointment, I was in a little ball on the couch, and having my Dad help make sure I got into his truck. I still need rides going to any place that is past my 15 minute radius, which really stinks as I hate relying on other people. Ugh.
Back on topic… I could barely keep my eyes open, and all I could see was black purple and blue squiggly lines. I had a barf bag in hand…it was not a pretty afternoon.
Most people would probably be terrified on these days, but I am so used to them that it doesn’t even phase me. This too shall pass? I don’t know.

 It is what it is.
The biomagnetic therapy seemed to help. I felt a lot better after my session, and was even able to pick up take out for dinner on my way home.
I had a “blue sky” day on my first day of Coartem. I started the day off by going out to breakfast with Dave’s family. It was really loud and busy in there, so my head got jumbled up and I get very “fuzzy”, but I was fine. I then went with Dave to two stores on our way home. That is pretty miraculous for me. AND THEN!!!, I got a decent amount of cleaning done when I got home. This was a very good day for me.
Of course, there seems to always be a punishment for having any sort of a better day. I have fallen once (luckily not a bad one), I have had a lot of foggy days.
My first, someone said, “good morning” to me, and instead of saying it back I replied, “good night!” To be fair, it was a Monday. I have definitely been out of focus. Needless to say, I haven’t gotten a whole lot done at work. Sorry boss if you are reading this…
At night, and throughout the past week or so, I have had some tics. These aren’t quite as bad, I guess I would describe it as cringing, and I had a few good yells at night.
I have taken a few evening naps, but I still seem to be doing really well on staying on a “normal” schedule. I think trying to get out there and do things is completely exhausting and overwhelming on my body.
That is okay though, I still have a very rewarding and accomplished feeling pushing though and doing what once seemed completely impossible and off the table for anything I would ever be able to do again.

 

I had another blue sky day since I last wrote! Two blue sky days. Wow. I made two quick trips to the grocery store, a coffee stop, went to the bank and pharmacy, swept vacuumed, did some some dishes, cleaned the tub and washed some of our wall trim.. all while dealing with the neediest high maintenance brat puppy ever. Seriously. Wow.
Afterward, my legs felt like complete jello, and everything to me seemed dark, so I knew it was time to rest. I really wanted to use my recumbent bike that evening, but that was a nap day, and I really did a lot. I didn’t feel all that guilty for taking the rest of the evening off.
I don’t know if it is my treatment, methylcobalin shots again, or my new biomagnetic therapy but something is starting to work.

 

This truly shows having this disease.. well any chronic illness, you can have significant improvements in a day, then completely fall apart. I just hold onto those good moments, keep positive more will come, and you need to just live day by day. It will make you crazy thinking of the future.

 

Dave and I are trying a new diet plan. We have actually been eating vegan. I thought Dave wouldn’t make it a week, but he has been so good, I am really proud of him. I think having a partner in trying a new diet, workout, or anything of the sort helps. It makes you more accountable.

 

I have lost 6 pounds (losing weight wasn’t the goal but I am not hurt by this at all 😉 ). I am way less bloaty, and I no longer have horrific stabbing stomach pains.
I still haven’t mastered the art of tofu, haha. I am realizing that there are so many options for meals. Our favorite is a meal is almost like spaghetti, only it is filled with veggies, you don’t even need more miss pasta, so it is a lot healthier and lighter.

 

Now the big decision. I have decided that I am no longer going to go to my LLMD in DC. This was a huge and hard decision for me. My mind was all over the place, and a big part of it was a mental thing that I would be leaving “THE” Lyme doctor. If that makes sense.

 

I haven’t taken this decision lightly, but a piece of me knows that the clinic has done everything they can for me. I have not been happy and very frusterated for a long time for a number of reasons that I will not get into. I do not want to and will not bash them in any way, I really did need them very badly when I was at my worst. It was life changing for me during that point in time.

 

I do owe them so much, as I am no longer in the place I was at, basically completely useless, needing Dave to push me around in a wheelchair, bathe me… the list goes on. I have so much appreciation and gratitude towards them.

 

With that being said, I have altered some protocols on my own, lessening them as needed, and I just have a negative frame of mind now, and I have a positive outlook and better vibes with my local naturopath that has helped me along the way throughout so far, a 3 ½ year journey.
As of right now, it has been nearly two years without significant changes. I have had a few blue sky days, but it really isn’t determined what it is from. My tweaked protocols, the biomagnetic therapy? My immune system working better? There are so many factors.

 

I will tell you, with and having Lyme, I see so many people give up very quickly with doctors when they do not see immediate results. With this illness, all I can say is patience is a virtue. You need to have faith in your doctor and give it time. Do not give up. Give your doctor a chance. This is not a sprint, it is a long frickin marathon.

 

For me unfortunately, after this amount of time (YEARS), I think it is just time to move on. Something is still missing, I am sure of it, and I like I mentioned, I personally believe I have gotten all I can out of the clinic.

 

I am not giving up, folks I promise you, but as Einstein once said said, “Insanity is doing the same thing over and over again and expecting different results.”

 

My recent appointment with Dr S got me feeling more positive, and honestly I think it will be a trial and error for my treatment, which is okay. I really think he will find the right combination that will work for me.

 

He truly listens and takes his time, putting great thought into what he thinks will be best. I am not shy around him, and he doesn’t beat around the bush with telling me the truth. I am also optimistic about my biomagnetic therapy treatments.
His concern as of right now, looking at several of my blood work papers, he wants to figure out what my liver is doing wrong. It is functioning poorly.
A test suggested is a urine test that tells you about nutrients, liver function, energy production, brain chemistry, and gut infections. On point, Dr S, let’s get this all figured out.

 

This is still a scary moment for me, I will not lie. I still have not picked up the phone to cancel my appointment. I need to, and I think that phone call will be today.
This is a big step, I need to do this for me, I need to be brave, and transition to what may be completely life altering for the better (I am hoping for some level of remission for me), or for the worst.

 

I really truly believe this is the right path for me. Say a prayer, wish me luck. I am officially starting a brand new path on my road to recovery.

And of course, you get a picture of Miss Olive, snuggling with her Mumma.  🙂 12801672_10153493275242404_4837392389664443509_n

July Part 2 – There’s That Herx!

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I recently finished my protocol and am on a little break until I go back to see my LLMD.  The last days of Coartem although I was a lot less emotional than I usually am… not really sure why.. but I have heard of others that have the same reaction so I know I am not alone with that. Side effect or the Babesia stirring around, who knows.

The classic Babesia symptoms had definitely came to me, mostly in the form of sweating buckets, and air hunger. I did have to press my heart monitor button once because my heart rate was rather high trying to get ready for bed. To my surprise, there was no insinuations about doing drugs or partying, so that was pretty nice. Maybe I scared them a little bit. Haha. I can be quite unpleasant if you get on my bad side.

When it comes to pain issues, I had one that I haven’t really had. Especially during nighttime, it is common for my legs, feet, and knees to hurt, but for one entire day it literally felt like my right leg was going to explode. It felt “full”, if that makes any sense, and it was beyond excruciating. All day, all night. I kind of try to take pain as an optimistic thing, as it seems like it is a step in the right direction. That sounds like an odd thing to say, but it seems like a lesser of two evils. Severely neurologically impaired, versus pain issues. Not saying pain is a walk in the park by any means, but not having the pain I have had in the past few months and now having it, maybe it is a good sign.

I have had my moments with my tics, one ripping a big layer of skin off my knuckle. I was sitting at my office desk, and did my thriller dance, and my hand slammed against the metal underneath the desk. Ouchies. It is funny that now my coworker, as well as friends and family don’t even flinch when I have tics anymore. I don’t even think Dave notices when I have my tics, which occur at night more than anything.

They occur way less often than they use to be, and are nothing like they were. Every once in awhile he will joke and ask me if I have a question when I do my hand raising though. LOL At least we can joke about it. I think that is the least of my problems at this point. I can completely tolerate this issue more than anything else. It isn’t hurting me, doesn’t make me dizzy.. nothing. When they were bad, I would just avoid the movies, fancy dinners, and I probably wouldn’t be considered appropriate if I went to church. I never felt well enough to try at the point to do those things anyway, so I wasn’t really missing out.

See my “About Me” video if you have not seen my starting point before seeing my current LLMD. Trying to explain and seeing I think are two entirely different things. When people think tics, they think of fairly common Lyme “twitches”. This appeared to be full blown Tourette’s Syndrome. Two different things for sure. The turning point in helping this out was probably around my 5th month of IV treatment with my doctor.

My electrophysiologist appointment has been made for next month. Although it is still the same hospital that has been treating me poorly, this is an entirely different department, and I believe this is the doctor that believed me when I had told him my LLMD believes I have some form of dysautonomia. This will either be a positive experience, or a waste of time. To tell you the truth, I am not worried a bit about the appointment.

After having a brief discussion with Dr S about my blood work, he told me that it appears that I have hemolytic anemia. You know me, I went and did some research on the topic, and there is a lot of overlapping symptoms that I have been having, including dizziness, tachycardia, and in some forms an enlarged liver and spleen.

Dr J had told me that the enlarged liver and spleen was due to my Babesia infection, but that was before I had these new tests on my blood work. This will be another topic to bring up at my appointments with the LLMD and electrophysiologist. My list keeps growing and growing with things I would like to discuss. Yes, I will probably be that annoying and time consuming patient. At this point however, I feel like I really need to be.

I hope everyone had a great 4th of July! I had to work over the weekend, and although I was exhausted, sweaty, and my body was in pain, I made the most of it, and hung out with friends. I decided it was best to not go to the fireworks, as I know how I am in those situations. Between the possibility of having to do some walking to get a spot, dealing with the massive amounts of people, and of course the loud noises and bright lights, that is pretty much setting me up for failure.

That is just way too much stimulation for me at this point. Unless I had my wheelchair, seizure meds handy, sunglasses, and ear protection, it would likely set me up for an “incident”. With that giant safety kit, it really wouldn’t be any fun and more of a pain in the ass than anything else. Maybe next year. I think mentally I have a fear of the 4th of July anyway, as that is when I had my grand mal seizure two years ago and had my not so fun ER experience.

Dave and I went to our friend’s house for a BBQ yesterday when I got out of work, and other than a bit of dizziness, and my usual Lymie symptoms, I feel like I did really well, and felt a little more like me. There was plenty of places to sit so I didn’t have to stand around at all, which I think helped a lot.  I was more social than I have been. It was nice to meet some new people, and catch up with some people that I haven’t seen in a long time.

Well, I think my body said “when” today. It is frustrating that even sitting at a BBQ gives me consequences, sometimes for days. Let’s hope it isn’t for days, and it will pass by tomorrow. I am also going to blame this on Coartem though, as it stays in your system for a decent amount of time, and it is a nasty herx.

Today was kind of weird. I felt alright this morning, well enough to actually take a shower and wash my hair. Sleeping seems to leave me drenched and it has begun to get hot out again, so I have been trying to keep up in the hygiene department for the past few days. I am sure everyone appreciates that, even though at the end of the day it really doesn’t seem to make a difference. At least I am trying.

I was having a hard time focusing at work this morning, but finally got my act together and managed to get a lot of reports I needed to get done all buttoned up. This was a big relief, since more and more have been coming in the mail, and it has given me a bit of anxiety since I like to get them done early, and I am pretty OCD about checking them to make sure they are perfect.

Just before I got ready to leave, I had this giant wave hit me. I went from okay (okay for me at least), to not okay at all. My stomach was in pain, I became really dizzy, and felt like I was completely overheated.

It was a lonnnnng drive home. I of course had that one car in front of me, that was feeling super generous and literally let every single car out of every side street that he possibly could. When you don’t know which surprise you may have, it felt like an eternity. I didn’t finish all my errands, so that was a bummer, but I needed go home, and TMI, do one of those sit on the toilet and hold a trash can times, and lay down for awhile.

I checked my heart rate while laying down, and it was 103, which really isn’t too bad at all. My blood pressure was higher, at 127/84, and I am running a temp of 101. Having the temperature is leading me to believe that this is likely Babesia. I signed up for a day of green juices to detox this week, ordered some aloe juice, and have been trying to drink as much water as I can. The dull pain turning into a slightly more stabby pain is making it difficult, so small sips it is.

I have been spacey, and just realized I have been home for awhile now, and had one of those spacey moments. Instead of my space out go-to of having the TV Guide going, I had a Spongebob marathon space out. Haha. I clearly need to take a nap. Once again, I am a little bummed because there were some things I wanted to do some things around the house, but I don’t think my body is going to let me. Resting has helped, but my body is so tired.

Tomorrow is another day, and it will be a day I will definitely focus on lymphatic drainage during my massage therapy session. Maybe that will help. Maybe it is just a case of the Mondays. 🙂

Have a good week everyone!

July Part 1 – That’s Not My Car?!

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It has been a week. I am on my very last day of treatment until I go back to my LLMD this month. I am beyond excited about this. I am ready for a new game plan. Beyond ready.

I have definitely been plagued by fogginess, depersonalization, and exhaustion the past several days. I guess I will start with my funny story, one that some of you may be able to relate to.

At the end of last week, I was not feeling well at all. I was herxing pretty badly from finishing up my last round of antibiotics during those days off. I had to deposit my paycheck, and pick up a prescription from the pharmacy.

I opened my car door, tossed my script bag and purse in it, then proceeded to get ready to sit down. There was one teensy little problem though…

This wasn’t my car. Staring at me, was a very confused and slightly horrified girl sitting in the driver’s seat, that I nearly sat down on. I can only imagine what was running through her mind. LOL

How I didn’t see her, I do not know. Her car was not even remotely parked near where my car was parked, and it was not the same model, nor did the car look the same. I drive a Legacy, and this was a Mazda. I got the color right though! Oy.

I was mortified, mumbling, “I am so sorry” to her, and she seemed really nice, telling me it was okay. I sat in my car embarrassed for a few minutes when I finally did find it wandering after around the parking lot in la-la land before I headed home. At least I didn’t end up getting punched in the face, pepper sprayed, or tazered. So that’s good, right?

By the time I got home, I spent the rest of the day relaxing, and I was completely over it. It is now just a funny story to tell, and I am sure she certainly had a funny story to tell others, that some crazy chick threw her stuff in her car and tried to sit on her. Shit happens.

Friends of ours just bought a house, and Dave and I stopped by. Dave helped move some of their stuff, and bring over their heavy pool table, and I sat and was kind of a boring zombie. I always feel so rude when I am like this. I look bored, and I do appear to be rude, but I just am kind of spacey and fluish.

I was a little disappointed, the girl who was beyond mean changing dinner plans to dancing to make sure the plans would no longer include me, full knowing I could not go a few months ago, completely crushing me, then starting a middle school he-said she-said drama fest, that although got squashed pretty quickly it was still completely uncalled for, showed up to my surprise.

It was just plain awkward, I just wanted to go home. Stressors just make me even more tired and achy, more symptomatic. At least I can be a civil person. An apology goes a long way, and that has yet to happen. Yep. Still irked.

It felt like a non-intentional but completely intentional gang up time, a be nice to my face but taking stabs at me in the back sort of night on both parties. Shake it off, Kimmiecakes. I could have went without though. No one likes hurt feelings.

I started my last hurrah, my round of Coartem on Monday. I really wanted to start it on Sunday, as it just works out better with my work schedule, but the pharmacy didn’t have it in stock. They thought they had another refill for me but were mistaken, so Monday it was.

That was a very long day, and I can’t even use the excuse of Coartem to be the cause. My Babesia is much better controlled than it use to be, which is very optimistic. Slowly but surely, my treatment has been effective toward getting it much more under control.

This morning, however, was a reminder that the infection is still there, waking up with soaking wet hair and clothes. It looked as though I jumped into a pool then crawled into bed. I had such a “good”.. we will call it good for it being intense, it wasn’t actually “good” tic in the office that I slammed my hand on the bottom of the desk, as I had my hands resting on my lap. Ouch!

You know that long talk I had with my heart doctors that led me to believe that I would be treated with respect and taken seriously the end of last week? Well.. that was rather short lived. I went online to make another few copies of my recent blood work to give to doctors in case they had not received them, and my medical encounter/diagnosis part of the bottom of my blood work was changed, from the moment I talked to them, to Monday. “Tachycardia NOS” was originally written, and then a medical coding that said in capital letters looking it up, “Methadone and Opiate Use”. Are you kidding me??!!!!

I went to the hospital to try to get to the bottom of this issue immediately. I demanded a drug test. Unfortunately, my GP is all buddy-buddy with my heart doctor, so I have been getting the run around. There were three doctors that could have signed off on the test but it supposedly needed to be “discussed”.

The heart doctor said he felt it “wasn’t necessary” to drug test me, and would be “too busy doing rounds” for this entire week. I talked to the manager of the department, and she claimed yet again there had never been conversations about drug use, and claimed there was no record of this all. Hey… let’s call her Felicia (that obviously isn’t her real name), I JUST talked to you about this issue last week. AND during our conversation, she kept contradicting the whole not ever having conversations about this by referring to our conversation, and another conversation I had with another woman there about the situation.

Asshats.

My next step was to call day surgery, who’s staff knows and loves me, as they saw me every week for 15 months, sometimes more than once a week, to see if they could get someone to sign. Unfortunately, no one was there to sign, but it felt nice that they felt the same way, that this is entirely bull.

Dr S came to my rescue today. He signed off on my lab work. A full drug panel. This way, there is no ifs, ands, or butts about all of this. I need to stay in control and be level headed, but I desperately want to write “See, go eff yourselves”, with a smiley face on the papers when I am able to fax them over. My next step after this is to make sure that record is changed.

People left and right are telling me to sue, technically I have every right to, you cannot diagnose someone with being an addict without ever testing them, nor can you just go changing around paperwork, nor can you continuously harass patients with name calling, not making my medical care or truly figuring anything out possible in any way.

Unfortunately they are very careful with wording, and I already talked to the Medical board in NH when I was extremely mistreated by the ER see:  https://kimmiecakeskickslyme.wordpress.com/2013/07/11/july-part-2-hi-ho-hi-ho-off-to-the-er-i-go/  , followed up by how far I got with the state :   https://kimmiecakeskickslyme.wordpress.com/2013/08/09/er-follow-up/    and learned pretty quickly, right or wrong, legal or not, they tend to side with the doctors. The last doctor, the ER doc, got fired a week or two later because he wrote scripts to himself, so the Karma train did hit him, and not going to lie, it put a smile on my face. It made me feel a bit more even.

I also found that my hospital (not the hospital who is throwing out these accusations), cannot prove they were the ones who changed the paperwork, although it is pretty Captain Obvious to anyone with half a brain.

I called the manufacturer for my heart monitor at that point, to let them know that this is how the hospital is representing their company and their medical device, and also to ask them out of curiosity if I decide to get the device removed, if I can get it removed at a hospital of my choosing, and mail their internet modem back to the company. I have one of their personal numbers, and will call them once I decide exactly what I want to do.

It has clearly been a lonnnngg few days. I am remaining strong, and am advocating for myself. I will get this all sorted out. A big pot hole along the way, but I will make it through it, I always do.

After all of this however, I have decided at this point I might need to tell my LLMD office that I need a break. Not a break from treatment, but a lighter treatment. I think there should be no issue with agreeing on this, as I was told he does not give out any stronger protocols than the one he specifically put me on, and I have been being treated so aggressively for a very long time.

I need to tell them between the mistreatment of other doctors, and I think even worse, whatever Cipro was doing to me, I need to have a much lighter load. I am a positive person as you all know me, but my spirit has been breaking. Little by little. I need some sanity. This isn’t giving up, this is giving my body and mind a bit of a rest. I hope they understand.

Tonight Dave will be gone to a club meeting, so I will be here, likely napping. I know when it is time to take those four last little pills in the bottle, it will be one of the happiest couch dances I will ever have. One step of the journey down, and another will soon lie ahead. I have no idea what to expect, and that’s okay. For the moment, I am just going to bask in the glory that I have been so strong and have made it. I never gave up.

May Part 7 – Break Time!!

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Yesterday was the last day of treatment of this round, and I have just started my 2 1/2 week break. Yay! Thank God. The past few weeks have been nothing short of hell. All I can do is hold onto that one better day I recently had, and hold onto it tight. I know that there will be more to come.

Over the weekend, before I started my round of Coartem, I was feeling rather “blah”. I did a day of juicing to focus on getting some of the toxins out, particularly the toxins in my liver, and had to take it completely easy, as I had what I would like to call, “Cipro foot”.

There is so much controversy over this particular antibiotic, as the side effects can be quite severe, tendon damage being one of the bigger issues, (we won’t get into this debate, as people can have extremely strong opinions on Cipro), and I will say as long as you do your research, weigh out the good and the bad, and know the side effects, take what you feel is right for you. I advise you to do this with ANY drug you take, as there can be fun side effects for anything you may put into your system.

I will tell you though, Cipro has been a humongous help to me when it comes to addressing Bartonella. Dr J once gave me the option to stop taking it, as when I was on the IV form I began having issues about a year ago, but that at point Dave was pushing me in my wheelchair so it was very easy to take it easy and baby it. Within two weeks or so, everything was 100% back to normal. Now that I am more functional, it isn’t all that pleasant. Even driving was a task and a half.

Couch time it was. I was pretty bummed. I was actually feeling well enough that I knew I could have gone grocery shopping with Dave as my chaperone, but I knew that it would be a very poor decision on my part. All I managed to do was fold some clean laundry. Dave even has been cooking dinner for the past several nights.  I ended up spending the weekend sleeping a lot, and watching movies. Boo. 😛

The babying of the foot definitely paid off, although my massage therapist said my tendons from my toes to the top of my foot were still inflamed, my foot feels so much better. Phew.

Every night lately, I have been having excruciating headaches. They have been so overwhelming that I can barely stand. They are beginning at the connective tissue at the back of my head, my lymph, and it moves to the front of my skull, ending around my eyes. Needless to say, I have been skimping out on my showers. I just can’t do it. Extra deodorant and perfume have been good pals of mine the past several days. 😉

Coartem did me in, not so much physically but mentally. I was angry, annoyed, and saddened when I had my few day round. Everything made me upset. I spent most of my time tearing up, or crying. I overreact to some things, trivial things like seeing a friend post a bazillion pictures on Facebook, tagging every single place with other people, yet I seem to constantly be an embarrassment, like I am that person that no one wants to know you are hanging out with.

That shouldn’t really matter, but it irked me. I stayed off the social media to not get any further pissed off. Every single mean thing that people have said or done to me all flooded back into my mind. I felt somewhat like a mutant. A very lonely mutant.

I was finding reasons that Dave no longer loves me in my head, All the stresses of my doctors appointments, and feeling like a medical mystery guinea pig ate at me. Sleep was my only salvation on this one.

I had my first cardiologist appointment since I had my heart monitor implanted yesterday. It went as I expected. At least the doctor was honest. He blatantly told me he had absolutely no idea. It is established that I have sinus tachycardia, but he cannot figure out the cause of it. I was told that nearly all cases are pretty cut and dry with heart issues that are seen, but unfortunately I am such a complex case it is hard to pinpoint a reasoning behind my episodes.

He is going to have a “meeting” with his team, other cardiologists and electrophysiologists to see what the next step is, if any additional tests would benefit me, and sort of got the possible pass the buck scenario. “We might recommend for you to go to Boston”. Hopefully the team of one of the top 5 cardiologist departments in the country can figure this out. I can’t be THAT complex, I wouldn’t think.

Then there’s the 24 hour pee test I am taking today. The “I am now pulling things out of my ass because I have no clue” test. He wants me to be tested for this extremely rare, potentially deadly tumor on my adrenal glands causing the sinus tachycardia. It is called Pheochromocytoma. That’s a mouthful.I am highly doubting this is the answer to my problems, but I will pee in my jug, and entertain it. Thanks Mr. Cardiologist for having me carry around a big ol’ pee jug to pee in and keep in my refrigerator for my birthday! It is what I always wanted.

As I mentioned, today is my birthday. 28. It really has been something I haven’t been looking forward to. Looking back, I started this whole Lyme journey and road back to health when I was 25. Three years. I had been feeling like I missed out on three years of my 20’s, which is suppose to be some of the greatest years of one’s life. Now that it is today, I guess it just seems like any other day.

All I can think is that things will turn around, and this will be the year I will begin to see significant improvements. Possibly even the year that I finally reach some level of remission?

Dave put a smile on my face this morning, as there was a card with the words, “old fart” (he is 5 years older than me, so he is clearly the old fart), and as I opened it, there was a rat’s butt, saying that he really does give a rat’s ass about my birthday. You don’t find it funny? Whatever. I do. Have a little humor. You old fart.

I got a message via my blog today, and had another good laugh. One from a life coach, claiming that if I have a positive attitude and follow some positivity exercises, I can “will” all of my illnesses away. Poof! Gone! By golly! Why didn’t I think of that? If I think happy thoughts I can “cure” my Lyme and coinfections, seizures, tics, organ issues, endometriosis, heart issues and more?

That was the biggest laugh of my day. I wasn’t even mad. Some people really just don’t have any idea what this is like, and I will say that I think I have been pretty darn positive considering the crappy hand I have been dealt. I chose to be strong. I chose to fight. I chose to see the silver linings and appreciate all the good there is in life. Positivity is an amazing medicine, but it surely will not sure you, and you can not will chronic diseases away. I hope you are reading this sir. You, are a butt head.

I finished up work, and soaked up a little bit of sun. Dave has been working outside all day in this heat, and I have been having major balance and leg issues, and my arms feel like they are about a million pounds, so we are going to go out to a light dinner… where there is a lot of air conditioning. 🙂 Wishing you all a happy Wednesday!

And remember folks, WILL all your problems away. 😉

April Part 1 – Finito!

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This week has flown by. I finished my last round of my protocol, and I will not be on treatment until I go back to my LLMD. It was pretty exciting, since I have been on this particular treatment, with the exception of tweaking some of my neuro meds and supplements since September.

I really have no idea what to expect, but I am okay with that. I feel like change, no matter what it may be, will be a good thing. To be honest, my biggest change I would like is to get rid of that yellow chalky paint (you know what I am talking about if you have Babesia 😉 ). Not because it tastes yucky, as I seem to tolerate tastes easily… well.. with the exception of Flagyl, but because it is expensive and my insurance will not cover it.

Beginning my last little bit of treatment, Coartem, I felt like I was coming down with a cold, and it slammed me like I had the flu. Everything hurt. My head was full of pressure, and I was lightheaded. If you saw me taking my very last pills, I had a huge smile on my face, and made Dave give me a high five. Like I said, it was pretty exciting.

Since I have finished, I am having some classic Babesia herxes. I still feel fluish, a little air hunger and hot flashes, as well as a bit of chest pain at night, and have been running a temperature for the past few days, just over 100. For someone who generally runs a low temp, this is kind of high, which would probably explain the fluish symptoms. The positive: I know I am killing those little suckers and they are dying off.

My hope is that in the meantime until I go back to DC, I will do fairly well on my time off of treatment after this herx. I REALLY want to have something good to report back to my LLMD when I see him for my appointment.

I had my cardiologist appointment this week. Unfortunately, I got all screwy as soon as I got to my appointment because I had to take an elevator. I don’t know if it is just a “me” thing, but it completely throws me off. I find that closing my eyes and holding onto the sides of it seem to help, but it still doesn’t fix it. Luckily I was by myself on the elevator. People would probably think I was a weirdo.

Because of my elevator ride, my body was rocking back and forth during my appointment. The cardiologist remembered me from two years ago when I saw him last, and he did say that even though I was rocking, my neurological symptoms were much better. I was a lot more “quiet”. Haha. No “AHHH”‘s, no clapping, or anything fun like that. Just simple rocking back and forth.

My exam went okay, my blood pressure was normal, my heart rate was a little high, but really nothing to worry about. We went over my history from my last visits, which included a stress and echo test and an event monitor, and I told him everything that has been going on. My dizzy spells, lightheadedness, and passing out. The water seeming to cause a lot of issues with me, and he was curious about what may be causing it.

My last exams showed that I do have supraventricular tachycardia, meaning my heart can beat much faster than normal, but showed no arrhythmias. The problem with an event monitor is that you are only waiting for certain events and it is very short term, and a holter monitor you can wear for longer term, but you can still miss events if you aren’t “hooked up”. The other issue is that these monitors are not waterproof.

My cardiologist believes I could possibly have an arrhythmia that they have been missing. The game plan is a very minor surgery, getting what is called a reveal monitor. It is placed under the skin, and they can monitor my heart for long term, and it can obviously get wet since it is under the skin, and I won’t have to be hooked up to any wires. He said he would like to monitor my heart for 3 to 6 months to see if they find anything, but this device can actually be placed for three years!

I did a little bit of research, and I had to giggle. My heart will be monitored via the internet, so technically I will be a wifi hotspot. LOL I am not sure if they will find anything, and I really have no worries.

It is one of those things that I believe will be a good tool to figure out if there is a heart issue versus continued neurological issues, and after 2 1/2 years of treatment, I have the mentality that “it is what it is”. I will have my reveal monitor placed toward the end of this month, and then I will wait and see what happens!

I have been kind of trying to take it easy, letting the herx pass by. Today my mind has wandered off somewhere, so if you find it, please let me know and give it back to me. I started out the morning loopy, and instead of grabbing a washcloth to wash my face, I soaped up a pair of underwear to wash my face. Hey.. at least it was CLEAN underwear, but into the washer it went and I got myself a washcloth.

I went to the post office to grab the mail for work, and for some reason I forgot to turn my car off, and I still had it in drive when I was about to get out of the car. Thank goodness there was no cars in front of me, and I had cat like ninja reflexes and was able to put it in park before it rolled forward too far. Oy vey.

Once I finished work (there was no mistakes on my paperwork at least!), I went to the bank to deposit my paycheck. Standing in line, waiting for the lady that was chatting away with the bank teller, telling her her life story (don’t be one of those people who feels the need to make friends with cashiers or tellers, or I will want to hurt you), I fell sideways. The people in line probably thought I had a cocktail or two during my lunch hour, haha, but at least I didn’t tumble completely over. I can’t seem to just stand straight up for any amount of time without having something to hold onto or lean on.

What else…. (Brain fart). Oh yes. Yesterday I saw a woman that was kind enough to hold a jewelry party in my name to raise money for my medical care. That was nice of her. What wasn’t nice of her is that she kept every single penny, and just used my name to boost her sales. A disgusting thing to do, not only to me, but also to those who purchased items with the thought that the profits would go toward my care.

I saw her and made eye contact with her, and she literally hid from me in the little gas station store I stopped in to pick up a coconut water. Ridiculous. I didn’t have the energy to say anything and just wanted to get in and out of there, it just irked me. I guess rightfully so. It reminded me of all the crummy things that have been done to me during the course of my illness.

I think the worst is the stares and comments of others when my tics were really bad (I have just about gotten over this, and can just joke about it, as it is something I have no control over), being no longer included in activities (or uninvited like the recent dinner/dance fiasco) giving me huge feeling of loneliness, and people who I thought would be there that have disappeared, or have said terrible things about me, such as I am lazy, I pick and choose what I do, and going as far as saying I brought a grand mal seizure upon myself. What? I even had a person that I thought was a best friend stop by and see me after 6 months of being really sick come over not to see how I was doing, but to ask for money. I gave her the only 8$ I had, and I have not seen or heard from her since. Alrighty then.

Then I remember all the good, and I hold onto that. Great people that love me. Dave, my family, good friends. People who have supported me throughout this journey, even those who don’t even know me that have been willing to help. I have good doctors that really do care. The accomplishments that I have made along the way. I am getting better slowly but surely. That is all that really matters. Yesterday though, everything just pissed me off. Hold onto the good, and then you will realize no matter what there is good. Rainbows, butterflies, and unicorns. Just snip the fat, cut out those negative Nancies.

This weekend I am hoping to get out to dinner with Dave. I think trying to sleep in as long as humanly possible tomorrow and doing a little detox will get me ready for the weekend. I am working on Easter, but I hope you all have a great holiday, and get to enjoy spending it with those you love, and get to eat some yummy foods. 🙂

Happy Friday everyone!